Inspirational Stories

I can draw a hard line between my old life and my new reality, and this was the day I was diagnosed with acute myeloid leukemia (AML) in August 2022. Looking back on that day, I realize I didn’t have any idea what was ahead and what would be required of me, but I came to a quick realization I needed some sort of routine to make it through each day.

Things happened so quickly. I received my lab results via my online medical chart on a Wednesday and realized my blood numbers were WAY off. Thursday I was seen by a nurse practitioner, and Friday I underwent a bone marrow biopsy followed by immediate admission to the hospital. Chemotherapy was started right away.

On my second day in the hospital, Dr. J came in to assess me. He told me the length of stay would be three to four weeks, and I needed to stay active throughout. He mentioned a prior patient who had purchased a portable treadmill for his room. That very day I found an upright stationary bike with what looked like a comfortable seat, some assembly required but reasonably priced, on Amazon. I didn’t hesitate to place the order. It arrived several days later, my husband assembled it and brought it to my room. That bike came with me through all my hospitalizations for AML. Other essentials have been my yoga mat, foam roller, hot water pot, and pour-over coffee maker (because good coffee is a non-negotiable as far as I’m concerned).
Within four to five days of starting chemotherapy, I began having food aversions that would persist through almost the entirety of the 27-day stay. My nurse made sure I had a small refrigerator in my room, and my husband, Charlie, brought me anything that sounded palatable at that moment in time. The hospital I was at didn’t offer a variety of dietary options. In fact, everyone in the whole hospital got the same trays. Most of the time I requested “no tray” because even the smell of cooked food made me nauseous. Someone from dietary came up to see me to discuss what might work, and they started sending up Ensure at every meal and between meals, but I couldn’t bring myself to embrace a product with corn syrup as its first ingredient. So, Charlie was my lifeline. We developed a shared list using Google Keep, and before he left home to visit me each day, he would check the list and make or buy food that sounded appetizing to me. Charlie brought me my smoothie maker quite early in the hospitalization, and I was able to make customized and much better-tasting smoothies than was provided by the hospital dietary department.

I realized quite early in this initial hospitalization that if I didn’t develop some sort of routine, the passage of time would be interminable. Dr. J had emphasized a choice I would need to make was to either lay in bed most of the time, or I could push myself to be more active. As I had a 40-year career as a physical therapist (which ended suddenly with my diagnosis), there was no doubt which path I would choose. A sample of my morning schedule follows:

5:00 a.m. ― meditation
5:20 a.m. ― yoga and stretching on foam roller
6:00 a.m. ― sponge bath, CHG wipes, get dressed
6:30 a.m. ― order or make coffee and breakfast
7:00 a.m. ― read news on my iPad
8:00 a.m. ― stationary biking 20-30 minutes, varying resistance depending on how I was feeling
9:00 a.m. ― walk in the halls wearing air pods and listening to my “hall-walking playlist”

I would vary this routine based on transfusions, chemotherapy, and visits by medical professionals. There were days I didn’t feel like exercising, but I tried to adapt my workouts by reducing intensity or duration to do something most days.

Meditation bookended my days. About five years ago, my husband and I learned to do Transcendental Meditation (TM), which became a routine of 20 minutes twice daily during those years. I found TM to be of tremendous value during my treatments and recovery, settling my system both morning and evening and giving me a fresh start each time.

Another valuable tool for me was visualization. When my red blood cell count was low, I went to YouTube and watched videos on how red blood cells replicate. Then when I went to bed at night, I would visualize my cells in the marrow doing just that. When my platelet count was low and remained low for a time, I did the same for those. Platelets are the blood clotting cells, and when my platelets were low, I had a nosebleed, bruising, small, red dots on my legs (petechiae), and fatigue. During chemotherapy, I visualized the chemo coming in with laser guns and picking off those leukemic blasts. Of course, I’ll never know how helpful this visualization was, but when so many things are out of a person’s control, you take charge where you can!

Over the past two years, I have been hospitalized for over 100 days, receiving induction chemotherapy, consolidation rounds of chemotherapy, clinical trial infusions, and a stem cell transplant. I believe having some sort of schedule allowed me to have a measure of autonomy over circumstances that felt very out of my control.